I am Cs dad; he has ASD (Autism Spectrum Disorder). This blog represents my reflections, insights, learning, and feelings about being an ASD Dad. But to be clear: I am just one of many, many autism dads. My experiences are my own, though I suspect others may relate.
Who is C?
C is a twin
C was a 30-week preemie
C is 5 years old as of this writing
C needed 7 rounds of CPR at 10 weeks of age
C has a very rare lung disease which is in remission
C was on oxygen 24/7 for nearly three years
C has autism
These are the facts, but they are not the totality of C.
No, C is a bright, active boy. He loves to laugh, and he loves to make you laugh. He is mostly even-tempered. He is kind and very affectionate. Though he has social and behavior deficits, he has some so-called splinter skills like very advanced math and reading. C has a mop of thick reddish-golden hair that sometimes sticks up like a rockabilly rooster. He has giant blue eyes, ruby red lips, a skinny little body, and he’s tall for his age. C is my son.
For nearly three years, wherever C went, we followed, because we were attached to him by a tube that connected to an oxygen tank that we wore in a backpack. When we were out with him, some people stared, others averted their eyes. Some looked at him with pity, others with emotions I don’t care to consider. Children are the best, because they are direct in their curiosity.
Our home was filled with the non-stop brrrrrrrrrrr-pfoooo-paaaah of the oxygen concentrator that kept him healthy and added to our electric bills. C didn’t notice the oxygen tube that slithered up his shirt, around his neck, and into his nose, except on the occasions when the tape on his face started to peel or he trips over the tubing.
As rare, incurable pediatric lung diseases go, C’s is not the worst, not by a longshot. He won’t die. He doesn’t need a lung transplant. As long as he stays healthy, there won’t be further damage to his lungs. As long as he keeps his weight up, he won’t end up on a feeding tube like so many children with this disease.
And, he’s in remission. So far, of the very few documented cases, most children do not end up back on oxygen. At this point in time, there is no reason to believe C will ever need oxygen again, and it appears for all intents and purposes he’s made a full recovery.
As hard as it was to accept C’s lung disease, it was easier than the autism diagnosis which came later. The lung disease is physical and, while it did affect his mood, it was not an essential part of C’s personality the way autism is. Yes, life on oxygen, with its lack of freedom and uncomfortable stares from others, certainly has a material impact on one’s psyche, but autism is a defining personality characteristic, it dictates the very workings of the brain itself.
We first began to notice something was different with C shortly after he was a year old, but we chalked it up to shyness or simply having a serious health issue. After his lung biopsy at 15 months, however, we started to take note of the so-called “signs of autism.” At first it was little things, like hand flapping or odd verbalizations. Over time, however, C withdrew into himself. He stopped engaging with his twin, lost interest in others; his language was pure echolalia; he began lining things up; he stopped saying “hello” and “goodbye”; etc.
Our pediatrician ignored our concerns, and even implied that we were being neurotic. This is the same pediatrician who missed the severe respiratory distress C was in for months leading up to his eventual pulmonary breakdown. Note to parents: trust your instincts when you think your doctor is wrong. At first we went along with him because we didn’t want to believe it was possible that C could have autism.
Finally, though, we could no longer deny what we were seeing in C, so we saw a pediatrician who specializes in psychiatric issues. After spending nearly a solid hour with C, he told us our son was definitely on the spectrum. Our ASD journey was underway.
We got other evaluations which confirmed his assessment. We read what we could until we were overwhelmed; we joined online communities; we talked with other parents of ASD kids. We fought with our insurance company, we fought with each other. We were overwhelmed, scared, frustrated, and angry.
With time, however, came acceptance. Some family and friends took longer than others to get on board, and some still haven’t. But for us, the diagnosis was, in some ways, a relief. Our suspicions confirmed, we could focus on the task at hand: trying to help C have the life he, and every other child, deserves. A life of friendships, achievements, family and love.
Why I started ASD Dad.com
Having a child with autism — or any serious developmental issue — can be a frightening, isolating experience. Hearing or reading the stories of others has been a source of insight and reassurance for me. By writing this blog, I hope to do the same for others.